«All childhood cancer patients should have the right to fertility counselling»
Interview with Jasmin Schefer, Survivorin
Jasmin Schefer was diagnosed with leukaemia when she was at primary school. And she was cured. When she was 13, the cancer returned – this time in the form of a parotid gland tumour. She was cured again, went back to school, did her Matura (the equivalent of ‘A’ levels) and went to university. Today, the 29-year-old teaches maths and needlework and has been married for a year. Jasmin and her husband would like children, and then suddenly they thought about possible fertility issues. And they are not on their own there: survivors like Jasmin Schefer are often confronted with fears and worries of how their cancer treatment may have affected their fertility. It is often the case that there is insufficient knowledge about the risks and about the possibilities of prevention. This is why there should be systematised counselling services that provide survivors with comprehensive information about the subject at an early stage and also give them the necessary support.
Ms Schefer, you had cancer twice as a child. Could you tell us something about your story? I was diagnosed with acute lymphatic leukaemia (ALL) when I was seven, just as I was starting year one. As a result, I first had to undergo inpatient chemotherapy, then outpatient chemotherapy, which lasted about two years in total. It was virtually impossible for me to go to school any more at that time, but I was lucky to have great teachers who actually came to my home. And that made it possible for me to start school again in year two. After that, everything was fine, until I suddenly developed a lump behind my ear at the age of 13. I was diagnosed with a parotid tumour, which is a malignant tumour in the parotid gland. The doctors operated to remove it and I was given radiation treatment. As you can imagine, it was extremely stressful but I still managed to do my Matura exams and study: I love intellectual challenges such as maths.
More than 80 per cent of childhood cancer survivors suffer from late effects of the disease and the therapy. How badly are you affected?
My face is paralysed on one side as a result of the operation and the treatment I received for the parotid gland tumour. This was very difficult for me to bear psychologically, especially as a teenager, and to be honest it’s still an issue for me today. My mother has always supported me and she gave me a lot of strength in the most difficult moments. What I find most difficult today are the balance problems I have. They stop me from moving properly, which is why I can’t really run or skip. Since the radiation attacked the enamel on my teeth, I have problems there too. On the whole, I’m fine, but the problems remain and until a few years ago I didn’t know that these could all be the late effects of the disease and therapy. If you actually survive cancer, you think the worst is over. But over the years you notice that in some way or another the illness is going to be with you for the rest of your life. Not least when you decide you would like children yourself, find out that the disease may have affected your fertility and that there are significant costs to be faced.
There are various follow-up care services for survivors, but they vary according to the location. Was the subject of fertility and wanting children later in life discussed in your follow-up care?
Neither my parents nor I knew that follow-up care was important and what exactly was on offer. Any information we wanted, we had to find for ourselves and paid for a lot of things out of our own pockets that we might have actually been covered for. The chances are I would also have been entitled to disability insurance benefits, but we didn’t apply for any because we simply didn’t know anything about them. I completely fell through the net. The Childhood Cancer Conference* one year ago was the first time I had the opportunity to find out more about the late effects of childhood cancer, including the issue of fertility. What they discussed there was really helpful for my husband and I. I have now found out that my lack of concentration is also one of the late effects and I can handle it better now. Even though I take part in a clinical trial and have a check-up every five years, I didn’t know anything of the fertility risks until just recently. I found out about the risks by pure chance and when I heard about them for the first time I felt emotionally drained.
How important is it for you to have children and what questions are currently occupying you most?
Making a family and having children are very important subjects in my life. I’ve been married for nearly a year now and my husband would also like children. Everyone around me is gradually having children and I don’t know whether I will be able to have any or not. I did have a test a few years ago, but I don’t know what the current situation is. What if things have changed? I’m really frightened that the next test will be negative and that I may no longer be able to have children of my own. If I had known beforehand what risk the cancer treatment posed to fertility, I could have done something about it in good time. But now I feel helpless and wonder what I’ll be able to do if I can’t have children and who I can turn to. And I don’t know who would cover the costs if fertility-preserving measures are necessary, and what, if any, rights I have as a former childhood cancer patient. I hate the uncertainty.
What do you think should change?
Even though there might not have been any fertility-preserving measures 20 years ago, it would have been possible to take some form of preventive measures after my cancer therapy. Now, I don’t even know what to expect. All childhood cancer patients should have the right to fertility counselling. You should be systematically informed about the risks of the treatment and be given early options that would help you preserve your fertility. The same is true of follow-up care. Nobody has ever mentioned the subject to me and I have had to take things in hand myself. That is why I would like to see the topic of fertility automatically addressed in follow-up care and corresponding tests and examinations should become standard. Many survivors are completely unaware that they may have an increased risk of infertility because they are not systematically informed about it. Then, of course, there is also the financial side of it, which can be a burden, because you have to cover the costs of IVF yourself. But if infertility is a late effect of cancer therapy, I don’t see why the costs are not covered by the health insurance companies. So it’s not only the medical side of it, but also the finances that help decide whether you really can have a child or not. And that is so unfair to young people like myself. We’ve already been through a lot of suffering with the illness as children or teenagers.
* The national Childhood Cancer Conference took place as part of the International Childhood Cancer Day on 15 February 2020 in Bern, Switzerland. The specialist conference organised by Childhood Cancer Switzerland was aimed at affected families and survivors. The focus was on follow-up care, physical and psychosomatic late effects as well as socio-legal aspects.